Presentation Details
| Health Literacy in Pediatric Thrombosis Patients and Parents/Caregivers Athena Mancini, Denise Bastas, Sindi Mukaj, Gina Wong, Leonardo R.Brandão, Jennifer Vincelli , Diandra Rollan, M.Laura Avila. The Hospital for Sick Children, Toronto, ON, Canada |
Abstract
Background: Management of children and adolescents with acute thrombotic events and potential chronic complications includes both disease-specific (e.g., use of anticoagulants or compression garments) and general lifestyle strategies (e.g., modified physical activity while on anticoagulants to prevent bleeding and avoidance of risk factors for thrombosis). Patient engagement in the self-management of their condition improves health outcomes. However, knowledge and skills (i.e., health literacy) are important to effectively incorporate the expected disease-specific and lifestyle strategies. Objectives: To assess the health literacy levels of adolescent patients and parents/caregivers of patients with pediatric thrombosis and their perception of and satisfaction with their disease-specific knowledge. Methods: Patients aged 10-18 years with a history of venous thrombosis and parents/caregivers of patients aged 0-18 attending the Thrombosis Clinic at The Hospital for Sick Children (SickKids), Toronto, Ontario, Canada, for routine follow up, were prospectively recruited in this cross-sectional study. Health literacy was measured using the Rapid Estimate of Adult Literacy in Medicine Short Form (REALM-SF) for adults, the REALM-TeenS for adolescents, the Health Literacy Assessment Scale for Adolescents (HAS-A), and the eHealth literacy scale (eHEALS). Self-perceived thrombosis knowledge was assessed using researcher generated questions, informed by previous research. Results were compared between patients and parents/caregivers. Results: Eighty-six participants, including 36 adolescents and 50 parents/caregivers of children who sustained a venous thrombotic event were recruited between June 2023 and December 2023. The median age of adolescents at the time of participation was 16 years (25th-75th percentile 13-17 years) and 47% of parents/caregivers were younger than 40 years old. Health literacy, as measured with REALM, indicated that 22% of parents/caregivers and 28% of adolescents scored a grade range equivalent indicating that they will struggle with patient education materials. In total, 25% of adolescents had a reading level below their grade level. HAS-A scores showed low health literacy across the three domains in one to two-thirds of adolescents and 14%-41% of parents (Table 1). Overall, 78% of the adolescents and 58% of the parents/caregivers had one or more measures indicating low health literacy. Despite having direct experience with venous thrombosis and a median of 2 clinic visits (25th-75th percentile 1-4), ~25% of participants disagreed with the statements “I can recognize the symptoms of a blood clot”, “I know the treatment options for a blood clot”, and “I am aware of the long-term complications of a blood clot” (Figure 1). A key finding is that only one-third to a half of the participants were satisfied with how much they knew about the disease. Conclusion: Effective strategies to develop health literacy in this population are necessary to support the burden on patients and parents/caregivers to self-manage their condition. Such strategies will provide tools to translate health knowledge into behaviour, empowering these young patients to engage in health decision making and self-management across their lifespan.
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No part of this publication may be reproduced, distributed, or transmitted in any form or by any means, including photocopying, recording, or other electronic or mechanical methods, without the prior written permission of the author.